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About Us

The Understanding Congenital Heart Defects (UCHD) project is an open-access website that provides high-quality educational material targeted to those interested in this fascinating field of medicine. One can find definitions and descriptions of a myriad of congenital heart defects here including narrated video presentations of gross anatomic specimens, echocardiograms, angiograms, computed tomography, magnetic resonance imaging, and surgical interventions. The construction and maintenance of the UHCD site are well beyond the efforts of any individual. It is the product of the combined effort of many dedicated physicians, imagers, and information technology experts. We also owe an incalculable debt of gratitude to the many anonymous individuals whose hearts are featured in these educational modules. Below is a list of individuals who serve a primary role in building, maintaining and managing this website: Curators: Stephen P. Sanders, MD and Michael Fahey, MD Board of Advisors: Roberta Williams, MD (Chair), Ornella Milanesi, MD, and Jim Tweddell, MD Scientific Review Board: To be recruited Web design and programming: Sahar Akbari Information technology: Kiran Guntupalli The UCHD site is funded by a grant from the New England Congenital Cardiology Research Foundation and by the Cardiac Registry at Boston Children’s Hospital. We gratefully acknowledge Dr. Jim Lock, Department of Cardiology, Drs. Pedro DelNido and John Mayer, Department of Cardiac Surgery, and Dr. Mark Fleming, Department of Pathology, Boston Children’s Hospital for their support.

Governance

A) Co-investigators/Curators: Drs. Stephen Sanders and Michael Fahey are the primary investigators or curators for this project. The curators have developed a list of defects to be included on the web site and determine the priority of development. They are responsible for development of educational material appropriate for this project, including recruitment of material/expertise from others in appropriate medical fields. They coordinate posting new material and assign review board members to assess the new material. B) Board of Advisors (3-5 individuals): The role of the Board of Advisors is to provide guidance and assistance for management of this website. Areas addressed by the Board include the structure and content of the site, allocation of funds, fundraising, and recruitment and approval of members to the Scientific Review Board. Members of the Board of Advisors will be appointed by the co-investigators. Board members will serve for three years per term and can serve up to two terms. C) Scientific Review Board (6-8 individuals): The role of the Scientific Review Board is to confirm that educational material is current, appropriate and of high quality. All material to be posted for general access will be reviewed and approved by Scientific Review Board members assigned to the material. Members of this Board will be recruited by members of the Board of Advisors and the co-investigators. Members of this Board must have appropriate expertise in the field of congenital heart disease and its diagnosis and treatment.

How can you participate?

1) Submit an exemplary case of a heart defect We encourage users of the site to participate actively by submitting images of unusual, or not so unusual, defects. Each case will be reviewed by members of the scientific review board for teaching value and quality of images. The decision of the Review board and Curators is final. Echocardiograms, magnetic resonance images, CT images, angiograms, or images during surgery or of pathology specimens can be submitted. Images must be annonymized prior to submission. The patient name, hospital number (or other identifying number such an autopsy or surgical path number), birth date, exam date and institutional name should be removed prior to submission. Images submitted with identifying information will be deleted immediately. To submit a case please contact Dr. Sanders at stephen.sanders@childrens.harvard.edu. Provide a brief description of the defect and why it is noteworthy. You will then be invited to a Dropbox folder where you can upload the images. We will notify you that the images have been received and inform you of the decision of the review board. 2) Leave us comments or suggestions for improvement. Send an email to: info@uchd.org, with your comments or suggestions.

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Home | Congenital Heart Defects | About | Feedback